Thursday, May 24, 2012

"Our lives begin to end the day we become silent about things that matter."

     It must be a rough week if I am blogging in the middle of it right?  It actually has not been a rough week I just am having a wee bit of a pity party and would like to share it with everyone.  Every week cant be amazing....unfortunately!!

     I got a call from Carpe Diem yesterday.  That is the seizure camp for children.  The one that Braydon is supposed to attend in July......Well they are not sure if they are going to allow him to come.  The Board of Medical Doctors reviewed his case and they are not sure if this summer would be a good year for him.  They are concerned about the severity of the seizures, the frequency of the seizures, and being so newly diagnosed.  I have decided to not tell Braydon until we know for sure.  All he has talked about is summer camp.

      We actually decided to send him to summer camp this year before the Epilepsy.  He has been begging for years now and dad and I decided in December this would be the year.  So we started to do our research.  I wanted him to go to space camp in Huntsville and dad said OH NO to far away.  SO we started to look and then Epilepsy came into play.  Thanks to a great friend I got the idea to find him a camp that would remind him that he is a normal kid.  Finding a camp was not easy.  Epilepsy was not a word I heard a lot until Braydon was diagnosed and we still have not met any other children like him.  I know they are out there but none that I know of.

     So what better way to shed some light on his Epilepsy than sending him to summer camp for a week with children just like him.  It is super cheap, Doctors who specialize in his seizures, nurses and a staff that have dealt with seizures multiple times.  SCORE!!!   So we sent all of our paperwork in and ready to get our starting packet.  This took some convincing of Dad, the Camp is in Georgia!!  He was not OK with it.  But I explained how important this was to our family.  Not just Braydon, we all needed him to be happy if only for that week.  This medicine has made him a wee bit moody and we have a hard time finding Happy Braydon sometimes.  So dad agreed!!

     Now we have to wait and see if Braydon's neurologist agrees with us.  He has next appt in a few weeks and we have to convince him that this is in Braydons best interest.  I really hope that he agrees.  I cant look at that poor kid and tell him yet again he cant do something as a result of Epilepsy.  How hard would it be for him to understand that the Epilepsy camp wont take him.........

     Again like I said a bit of a pity party this am....but feeling better already!!  Just getting my feelings out there makes biggest difference!!  Thanks for all the support from everyone!!  It makes this so much easier!!

No comments:

Post a Comment